Help raise funds for young Zack

Zack sits with his father, Jeninio Hendricks, and mother, Andrea Amos.

Parents of a two-year-old Parkwood boy are looking for answers about the rare condition which affects their son.

Little Zack suffers from Toriello-Carey syndrome.

His parents are hoping to learn about possible treatment from their physician at the Red Cross War Memorial Children’s Hospital next year.

Zack’s mother, Andrea Amos, 21, said although they do not know what causes the condition, her son showed symptoms, which included fat covering his eyes, a bald patch on his head and dark spots on his skin.

Zack has already had two operations in his short life. When he was six months old he developed water on the brain. “His head looked bigger and when we took him to the doctor, they put a shunt in his brain to drain the water.”

Zack has also had an operation to remove fat that was visibly growing over his eyes and affecting his eye sight. “He had an operation to have the fat removed but it grew back. Although he can’t see, his eyes are sensitive to light,” said his mother.

All his organs are working fine but since he was born he had phlegm on his chest, she said.

Despite his condition, Zack seems like a happy chappy and was wriggling around like a normal two-year-old child.

His father Jeninio Hendricks, 22, said they would be visiting the physician at the Red Cross War Memorial Children’s Hospital next year to find out more about the condition and how they could proceed with an operation.

Jeninio said it was not always easy coping with Zack’s condition. According to the American National Centre for Advancing Translational Sciences website, there is no specific treatment for people with Toriello-Carey syndrome. Management is based on the signs and symptoms present in each person.

Signs and symptoms can vary but may include brain abnormalities, swallowing difficulties, heart defects, low muscle tone (hypotonia), and moderate to severe intellectual disability.

Andrea said they want to have the fat over Zack’s eyes removed again and they are currently working on raising funds for the operation.

They will be having a cooler box party with a character dress-up theme at Fairmount High School, in Grassy Park, on Friday December 13. To support the fund-raiser, contact Andrea on 067 896 3752.